Living With Stage 4 Breast Cancer: My Semi-Charmed Kind of Life

I led a fairly charmed life up until about the age of 29. I had a loving family, I was always surrounded by good friends, and for whatever reason, life just always seemed to work out for me. I know it sounds strange and maybe even a little arrogant, but I have always known in the back of my mind that life was going to work out in my favor. I was the gal who had a flat tire 100 yards from the tire shop. Seriously, that's a true story.

I had a boss who liked to say, when one door closes, open a window. I guess you could say I made it my personal credo in life. When my initial stage 2 breast cancer treatment left us wondering if we’d be able to have biological children, we decided not to leave our family up to chance. We went ahead and pursued adoption and Henry was the most amazing reward!

And when my stage 4 recurrence threatened our new family, I bought a wig and held my head up high. This was our little family and we had worked too hard to let cancer stand in our way now. Chris declared we were going to be the ones to beat the odds and we decided to do what we do best — We’d roll with it.

Now, almost four years later, my breast cancer has spread to my lungs, liver, bones and brain. The gold standard drugs have all failed me and now the doctors are asking me what I want to do next. I’m at the point in my treatment where I’m too educated to believe I can live with metastatic breast cancer for three decades like a chronic disease, but I’m still holding on to the hope of seeing a game-changing medical breakthrough in my lifetime.

I’m sad to admit my faith has officially been shaken. People talk about bumps in the road? Let’s just say I’ve had the summer of potholes and ditches. In July, I underwent whole brain radiation to try and zap those pesky brain mets we’ve been watching over the past year. I lost my voice as a result of palliative radiation, forcing me to relinquish my last vice left: my morning coffee. And to top it off, I went to Houston to enroll in a clinical trial and I wound up hospitalized for almost a week with a nasty case of pneumonia.

After a two-week delay for recovery, I have finally enrolled in the trial, but the new chemo is a whopper. So far, it has pretty much made me a grouchy, emotional lump on the couch. I’m only on round 1, day 5 and I’m really hoping it gets better soon. In a few days, I’ll make the four-hour drive back to Houston for another chemo infusion. Glutton for punishment, you ask? Nope. Just living in stage 4. I have no choice but to take my beating, muster whatever strength I can to get back up, then face another round.

Through everything, normalcy has always been my goal, because it helps me believe my world isn’t really spinning out of control. But when you’re not feeling well, just getting out of bed can feel like climbing Mt. Everest and with a super active three-year-old (who doesn’t even nap!), that mountain has to be climbed every single day, no matter how I’m feeling. Right now, I’m not physically able to take Henry to his swim lessons or play dates or even to the grocery store. This reminds me that life is not normal, no matter how hard I pretend.

I learned at a young age to strike the phrase, “life is not fair,” from my mind. Because as a wise man whom I respect a great deal often reminds me, “no one ever told you it would be.”

Even though I don’t expect life to be fair, I am beginning to wonder if everything really is going to work out in my favor. I don’t like having pessimistic thoughts, but I have to be honest — I’m struggling both emotionally and physically with this one.

As I sit here, facing indefinite rounds of a tough chemo that I so desperately need to beat back the cancer beast with a vengeance, science seems to be the one thing that can restore my optimistic outlook on life. I’m growing increasingly impatient waiting for something to happen. I need a scientific breakthrough and I need it now!

While I wait for science to restore my optimism, this prom queen is going to do everything in my power to keep my eye on the prize: I love my life and I will do whatever it takes to hold onto it. So tell me stage 4 peeps ... what’s your secret to putting one foot in front of the other, when you’re barely hanging on by a thread?

I led a fairly charmed life up until about the age of 29. I had a loving family, I was always surrounded by good friends, and for whatever reason, life just always seemed to work out for me. I know it sounds strange and maybe even a little arrogant, but I have always known in the back of my mind that life was going to work out in my favor. I was the gal who had a flat tire 100 yards from the tire shop. Seriously, that's a true story.

I had a boss who liked to say, when one door closes, open a window. I guess you could say I made it my personal credo in life. When my initial stage 2 breast cancer treatment left us wondering if we’d be able to have biological children, we decided not to leave our family up to chance. We went ahead and pursued adoption and Henry was the most amazing reward!

And when my stage 4 recurrence threatened our new family, I bought a wig and held my head up high. This was our little family and we had worked too hard to let cancer stand in our way now. Chris declared we were going to be the ones to beat the odds and we decided to do what we do best — We’d roll with it.

Now, almost four years later, my breast cancer has spread to my lungs, liver, bones and brain. The gold standard drugs have all failed me and now the doctors are asking me what I want to do next. I’m at the point in my treatment where I’m too educated to believe I can live with metastatic breast cancer for three decades like a chronic disease, but I’m still holding on to the hope of seeing a game-changing medical breakthrough in my lifetime.

I’m sad to admit my faith has officially been shaken. People talk about bumps in the road? Let’s just say I’ve had the summer of potholes and ditches. In July, I underwent whole brain radiation to try and zap those pesky brain mets we’ve been watching over the past year. I lost my voice as a result of palliative radiation, forcing me to relinquish my last vice left: my morning coffee. And to top it off, I went to Houston to enroll in a clinical trial and I wound up hospitalized for almost a week with a nasty case of pneumonia.

After a two-week delay for recovery, I have finally enrolled in the trial, but the new chemo is a whopper. So far, it has pretty much made me a grouchy, emotional lump on the couch. I’m only on round 1, day 5 and I’m really hoping it gets better soon. In a few days, I’ll make the four-hour drive back to Houston for another chemo infusion. Glutton for punishment, you ask? Nope. Just living in stage 4. I have no choice but to take my beating, muster whatever strength I can to get back up, then face another round.

Through everything, normalcy has always been my goal, because it helps me believe my world isn’t really spinning out of control. But when you’re not feeling well, just getting out of bed can feel like climbing Mt. Everest and with a super active three-year-old (who doesn’t even nap!), that mountain has to be climbed every single day, no matter how I’m feeling. Right now, I’m not physically able to take Henry to his swim lessons or play dates or even to the grocery store. This reminds me that life is not normal, no matter how hard I pretend.

I learned at a young age to strike the phrase, “life is not fair,” from my mind. Because as a wise man whom I respect a great deal often reminds me, “no one ever told you it would be.”

Even though I don’t expect life to be fair, I am beginning to wonder if everything really is going to work out in my favor. I don’t like having pessimistic thoughts, but I have to be honest — I’m struggling both emotionally and physically with this one.

As I sit here, facing indefinite rounds of a tough chemo that I so desperately need to beat back the cancer beast with a vengeance, science seems to be the one thing that can restore my optimistic outlook on life. I’m growing increasingly impatient waiting for something to happen. I need a scientific breakthrough and I need it now!

While I wait for science to restore my optimism, this prom queen is going to do everything in my power to keep my eye on the prize: I love my life and I will do whatever it takes to hold onto it. So tell me stage 4 peeps ... what’s your secret to putting one foot in front of the other, when you’re barely hanging on by a thread?

Dear Carrie;
Your plea for how to keep putting one foot in front of another moved me to actually sign in to this forum….I don't typically do any kine of social media other than email. But I felt I had to pipe in and just say to hang in there! I'm just turning 63 and have been battling breast cancer for 9 years, with the past two years being particularly difficult with the diagnosis of bone mets, and now soft tissue involvement. There will come a time in each of our lives when we know that continuing to "fight" is not living. I think that is a very thin line but we will all know when that is for us. Giving your family the very best of memories of who you are and what you mean to them is what they will remember, and none of them wants to see you go through the pain and suffering. It's hard to keep a positive attitude and continue to hold on to hopes of new drugs that will come along when you feel like you are at the end of your rope, but that's what has kept us going so far! I wish you and your family all the best and want you to know that your story has touched and inspired me so you know you have left your mark on at least one person…….you matter more than you even know.
Tomorrow is another day!
PL

Carrie, I, too, am living with Stage 4 breast cancer. So far, mine has reoccured locally in soft tissue as well as bone mets. I am 53 and my goal is to live until I am 70. Some may say that is unrealistic, but it gives me hope. I have a very strong faith in Jesus Christ and through that strength I continue on. I would not wish cancer on anyone, however, I must say that my faith has strengthened through this journey. I will pray for you and a miracle treatment. Stay strong in your faith. - Sharon

Carrie - my life was quite charmed until 46, but it has tried to make up for that in the past 11. I am a stage 2 survivor of 10 years. While I haven't had to deal with cancer recurrence, I have dealt with disabling foot problems, two tornados, and a back surgery in the 10 years since my cancer. I was very angry when I had the foot issues so soon after my cancer, but finally realized that life isn't guaranteed to go the way we want it to. I just look forward to something good in each day, and know that among the sunsets and flowers - there might be something bad (like a tornado! but that became 'whatever, lets just clean up this mess'). I wish you some joy in every single day, and hope that your new treatment is effective. Julie

At 53 I had mammogram had a lump. Needle biopsy came back negative. But 9 months later found out it was cancer and very active stage 2 and was in 2 limpnodes.
After chemo and radiation I was cancer free. April 2013 tumor #s were up. I was told to come back in six months. Well they were higher. I also had RA. Bone scan chest ex rays CT scans trip to Mayo clinic
Broke bones. Blood transfusion more ct'so
Bone scan and finally pet scan. None showed anything. Finally a ct scan looked
?.so bone biopsy 2 yrs shows bone cancer.
Of course stage 4. Aggression slow ..Dr could not believe I was doing so well.
He started me 3 weeks ago on Ibrance and Let ozone and xgeva.
2 times I feel I have been duped. I know I did my part both times as far as test go.
but God has got this I can't live in past
And I feel I have a long time to go and I feel this new drug Ibrance is going to help a lot of us.
I pray for all battling cancer.
God bless you thir ur treatments